Neuroma Surgery: A Patient's Perspective
This account is my own and I make no promises as to every medical
detail being accurate, the events are as just as I recalled them.
Any opinion expressed is entirely my own. I can't promise that each
surgery will go exactly like this one, but hope that it offers some
insight from a personal perspective. Consult your physician for
July 31, 1995
I went in for
a routine physical from my primary care physician. I hadn't gone
in about 5 years and felt that I should (actually, my wife felt
this way). Having an irrational aversion to physicals, combined
with being unusually healthy most of my life, has made me a bit
lackadaisical. The main reason I decided to have one was that I
noticed some hemospermia (blood in the ejaculate). Although this
sounds alarming, it is usually not a big deal and can be common.
After being referred to a urologist, a bacterial infection was diagnosed
and time and antibiotics took care of the problem. Anyway, at the
end of physical, I just causally mentioned that I did not think
the hearing in my right ear was as good as it usually was. I indicated
that I was aware of some loss for the last 5 years, but it was not
an inconvenience. About 6 months earlier, it seemed to worsen a
bit. A simple audiogram was performed and it was clear that, in
certain frequencies, the hearing in my right ear was not normal.
I was referred to an ENT (Ear, Nose, and Throat doctor).
At the ENT's office,
more sophisticated hearing tests were performed. One of the tests
involved sending some sound waves at the ear and noting the wave
forms produced, which indicates the functioning of the acoustic
nerve. Since the wave patterns produced were not normal for my right
ear, they decided to go ahead and order an MRI to get more detailed
information. The ENT said that it is probably nothing, but it is
not typical to lose hearing in just one ear alone (unless due to
noise exposure). It is always nice to have a doctor with a since
of humor (I think). At the end, he asked me, have you ever seen
the Woody Allen film, "Hannah and Her Three Sisters?"
I said I had and vaguely recalled that in the film Woody Allen had
to get an MRI and felt that he was going to surely die. The ENT
said, "don't be like the character Woody Allen portrayed."
I later on learned that in the movie, he was actually going for
an MRI scan to check for acoustic
neuroma. I had never had an MRI before and wondered what it
was like. He said, "I've never lost anybody yet (to an MRI)
and you're not allowed to be the first." I left not really
worrying about anything.
Getting an MRI
is a tedious process. It helped that I was not claustrophobic (although
they do have more "open" ones available). Having explored
a few caves for fun before, I figured I could handle this. The noise
level was a bit unexpected. Even though they give you earplugs,
it sounds like somebody is nearby doing some construction work,
ala jack hammer. You have to sit still for about 40 minutes. Half-way
throughout they injected a "clarifier" in me (it did not
make me sick, it just felt cold at first).
The ENT had the MRI results now and placed them on the reader. He
looked at the charts briefly and said, "looks like you have
an acoustic neuroma in your right ear." I never heard of this
condition and did not know what to think. It was indicated that
it was highly probable that it was benign (90%), but it did require
neurosurgery. He gave me a list of referrals, which even included
going to Tennessee, where there is a renowned center for doing this
kind of surgery. I decided to settle for a local location, having
a family in this area (wife, two active young kids, mother-in-law)
and not being made of money. I belong to an HMO, which has a default
neurosurgeon. However, the ENT recommended a neuro-otologist. Since
there was no neuro-otologist on my plan, the insurance company allowed
an outside team to do the surgery. Of course, this process took
hours of phone calls to verify and approve afterwards (thanks to
my wife for handling the calls). We set up an appointment with a
neurosurgeon and neuro-otologist at Georgetown. I left feeling a
bit taken back by it all. The ENT deferred most of my questions
to my neurosurgeons.
At work, I decided
to some quick research. We have access to the internet and a high-speed
connection. There are a number of "search engines" that
one can use, just type in a keyword and off it goes to search the
World Wide Web. I didn't really expect to find anything for acoustic
neuroma, but it almost immediately came back with an "Acoustic
Neuroma Homepage";. I went to that location using my web
browser and read the information on there. It was fairly extensive
and tried to answer a lot of questions. Having seen the list of
support groups afterwards was a bit depressing. I felt that anything
that has a support group must be pretty bad. There seemed to a large
list of side effects that could occur.
My wife has a
friend at NIH who works as a medical research librarian and she
was more than willing to get information for me (acoustic neuroma
information is not that prevalent in ordinary magazines). She found
about 700 abstracts and paired them down to list of about 100 abstracts
she sent me. I browsed through them all and got the full text for
about 25 of those abstracts. I was happy to be getting more information,
but the articles were, of course, very dry and clinical. Sometimes
the articles had bad statistics on the outcome of some of their
patients (in terms of a high number of people with side effects
or other problems). After a while, I realized that it is important
to take these things into context, some of these patients, for example,
where very old or had other problems. Also, even though some of
the older articles were only seven years old, a lot of advances
in technique can occur in that time. I realized that being in reasonably
good shape and having a positive attitude would certainly improve
those statistics. To that end, I started to exercise again (I always
felt I was too busy to exercise, after we had kids). Since I was
a bit underweight, I also decided to "fatten" myself up
by about 10 pounds in anticipation of losing some weight after surgery
(it is certainly more fun to try and gain weight than it is to lose
I had my initial
one-hour consult with the neurosurgeon. We discussed the three options.
Do nothing, which would mean the tumor could slowly grow and eventually
cause more damage and death (this might be an option in someone
very old). The radiation approach was discussed, which would involve
bombarding the sight with radiation in order to halt tumor growth
and finally, microsurgery. Radiation was ruled out due to it not
being as effective a cure (it does not remove it, there is a much
greater recurrence rate, and greater potential for delayed, long-term
side effects). Surgery was it. We got out the standard brain tinker
toy model and he showed me some of the details and went over some
of the potential side effects. I had mentioned to the neurosurgeon
my findings on the internet and he requested a copy of the information
that I got from the Acoustic Neuroma Association homepage.
Next, I was off
to my consult with the neuro-otologist. She launched into a basic
explanation of the disease and then we discussed the surgical options.
The first approach involved going straight through the ear, it did
not leave any possibility for hearing preservation, but involved
a decreased risk of headaches afterwards. The subocciptal approach
goes in behind the ear and can be used to potentially preserve the
hearing. She felt that there was a 25% chance that the existing
hearing in the right ear could be preserved. She gave me a booklet
describing acoustic neuromas, it had the same information that I
found on the Acoustic Neuroma Association homepage. I choose the
hearing preservation approach.
Later, with the
secretary ,we set a surgical date for October 10, 1995.
old son was too young to understand what would be going on. I told
my five-year old daughter that I would be in the hospital for about
a week. She took it well. Her main concern was that, "Mommy
does not know the Jazz Jack Rabbit (her favorite computer game)
secret codes!" I assured her that Mommy would receive instruction
prior to my surgery.
Had pre-op hearing
tests done at my ENT's office.
Gave a pint of
blood for my surgery. It was remarked that the blood supply is really
very good, but if you have elective surgery planned, you might as
well donate your own. The nurse remarked that I had, "gorgeous
veins", meaning they were easy for her (even so, a few minutes
into the donation, the blood stopped flowing and we had to switch
to the other arm).
Gave a second
pint of blood for my surgery.
Had a pre-op physical
at my primary care physicians office.
During this time
I worked as usual, although the surgery was on my mind a lot and
I am sure that this was keeping me from being that productive. My
colleagues were understanding. Being a software engineer, I am usually
on an exact schedule to complete various features for a software
release. I had most of my assigned features completed, except for
two. There would be no way to finish these two before the surgery
(unless I worked 100 hours or something, but that would not be a
good idea). So, the reaming features were put off for the next release.
I had gained 10 pounds, on purpose. I was exercising every other
day for cardiovascular endurance and trying a little strength training
when I could. This has pressed home to me that you should never
be to tried to exercise, but always do it so that you will feel
better and be in better shape for injuries and illnesses when they
occur. On a more philosophical note, I realized how great it is
to have a competent and caring partner in life (in this case, my
wife). She was really helpful, doing all the work with the insurance
companies, appointments, and trying to sell our house. We had been
trying to sell our house for six months with no luck. A few days
before the surgery we were going to take it off the market. But,
the house sold on October 5 and we bought a new (old) house that
So, no moving
boxes for me later on. So often during the busy schedule of the
week, things go by unnoticed due to lack of time. If anything, these
disruptive blows in life (e.g., brain tumors) do give you the chance
to refocus and evaluate your priorities and make you appreciate
the simple things you already have.
I told my 5 year
old daughter that tomorrow they are going to do some surgery to
remove my tumor. She wondered what happens if they don't remove
it. I told her it would keep on growing. She said, "will it
keep on growing and growing like a beanstalk and will there be a
castle on top?"
Woke up at 4:00
am to get ready to be at the hospital at 6:00am. My wife drove me
in. I suppose I was as ready as I'll every be and, at this point,
was tried of thinking about the procedure and potential side effects
(I had about a month to ponder all these thoughts and it did tend
to occupy too much of my waking moments).
The check-in procedure
was quick. I was pleased that the hospital gown can actual cover
your rear (not having worn one before, I assumed that a full-moon
was standard). The anesthesiologist came in and introduced himself
and answered any questions about anesthesia. He wanted to know if,
while we were there, if there was anything else you would like taken
out, like an appendix. I mentioned a vasectomy (of course, I would
have to pass on an anthesilogist performing the vasectomy). He injected
me with a "cocktail". (he referred to it as half-gin and
half-vodka). I don't remember much after that-no memories of the
operating table at all. When I woke up next (6.5 hours later-which
was short, it could have taken 8-12 hours), the operation was over.
I woke up in ICU,
and remembered my wife rushing in and talking to me. The surgeons
must have spoken to me earlier, but things were still kind of hazy.
I remember getting some feedback that the operation had went well.
I can remember testing my facial muscles and felt them working normally,
which was a relief-I was sure there was going to be some damage.
I had a slight headache.
I tended to keep
my eyes closed for most of the time. For one thing, I was tried.
Also, each time I blinked, the room tended to tilt to the left a
bit (sort of like being on a rocky boat, which only rocks one way
in a very rapid manner). This sensation does tend to make you nauseous,
combined with the after effects of the anesthesia in your system.
There is an overwhelming urge to drink afterwards because your throat
is so dry. Even the act of sucking on ice chips was enough to make
me feel sick. It was about a day before I could keep anything down.
tilting motion improved and I felt more alert. My next order of
concern, albeit a minor one, was the removal of the cathedar. I
had never had one before and thought it would be painful to have
it removed (they insert it prior to surgery when you are asleep).
The nurse told me to take a deep breath and when exhaling, she would
yank it out. It did sting, but it was out in about a second. Also,
it was a nice step to have it removed from me, so that I could look
forward to the more common act of relieving one self. The nurse
indicated that if you don't go on your own in about 6 hours, they
would have to insert it again. I think I must have drank about 4
pitchers of water in a few hours and finally went. A small victory.
ICU's are not
the best place to sleep. There are all kinds of monitoring devices,
noises and lights. Doctors, residents, nurses, are always coming
by and taking your temperature and flashing lights in your eyes
or waking you for medication. With a big bandage on my side and
not being able to move around that much on the bed, it was difficult
to get comfortable lying in bed.
I was moved to
semi-private room. It felt great to just to get out of bed and sit
in a chair. Additionally, it was certainly more restful in there
(although there are still many interruptions for medicine and tests,
but they do that for a purpose)!
Knowing in advance
that there would be only a 25% chance of hearing preservation, I
was not too optimistic and expected hearing loss or total hearing
loss in my right ear, so I did not think about it too much. However,
after making a phone call, placing the receiver on my right ear,
the hearing was serviceable and I did not have any problems. It
seemed the hearing was just the way it was or maybe just a little
less. In any case, this was a bonus!
I had a nurse
assist me for my first walk. I was a bit unsteady, but if I took
it slowly, I could shuffle around. She had her arm on me just in
case, but I did not need to rely on it that much. My neck was still
very stiff, it was difficult to turn my neck to the left or right.
They still had
me on a bland diet and the food tasted just terrible. At 10:00 p.m.,
confident that I keep food down, I asked for some kind of dinner.
They brought me up a turkey sandwich. I ate it quickly and noted
that this was the most bland sandwich I had ever eaten ( it did
not dawn on me until later to take into consideration taste alteration
as a result of the surgery).
After my sandwich,
I decided to go for a solo walk and shuffle around the area again.
Sleeping was still
kind of a nuisance. The pills tend to make you thirsty, thus I felt
a need to drink a lot and get up about every two hours. Also, they
were still putting these cuffs on your legs at night to alternately
massage the right and the left leg in order to keep the blood circulating
and prevent blood clots from forming. I found them annoying. Also,
the room was always alternating between periods of being normal
room temperature and being like an oven.
By now I was curious
about the taste sensation. I had my wife bring me a chocolate bar
(a taste which I've always had a fondness for). I ate it and did
not like the taste. By experimenting with foods, I found that, for
the most part, if I just placed the food on the left side of my
tongue, it produced a taste sensation that was about 70% normal
(although this did not work as well with chocolate). Sweet things
were off the most in taste. I developed a preference for pasta,
meat, cheese, since these tastes were closest to what I had experienced
before. In any case, taste sensations can certainly be expected
to approve over the months. If that was one of the only side effects,
it is a small price to pay.
I saw both my
surgeons today and they indicated that I could be discharged today
if I felt like it. I felt like it! I had to have an audiogram done
and then that was it. They gave me a discharge information sheet
and then I phone
my wife to pick me up.
Just as we were
getting ready to leave, a former acoustic neuroma patient that I
had spoken to on the phone stopped by to visit me in the hospital.
I must say, it is very worthwhile to talk to former patients, they
can give you a useful perspective. He happened to come at a great
time (he helped carry down the plants).
I felt great leaving
the hospital and was happy to arrive home. Later on that day, I
felt worse due to over exertion. So, I can only emphasize again,
even though it may feel good to get home, you still need to really
take it easy. In my case, it was just too much commotion at home,
too many stairs, and too many
active young toddlers
I had a chance
to observe my stitches for the first time, when we changed the bandages
on our own. It looks like a 5 inch zipper behind my ear on my head.
Most of the hair there was shaved away. I was at a distinct advantage
here, being mostly bald anyway (there are times when this comes
in handy). The stitches come out October 20!
The nurse removed
the stitches (a painless affair). Changing the bandages each day
was a nuisance, since removing the old bandages tends to remove
hair and some skin as well each time! More importantly, this meant
that it was feasible to take a shower again. The nurse mentioned
that after I stop taking the steroids, I will probably feel as if
I ache for a few days. I mentioned that I had developed a rash on
my chest and back for the last few days. This was apparently from
the steroids. I am finally off all medication on Monday, October
23. It was nice to be off the steroids (not the same kind used by
some body-builders to build muscle), I think they tended to make
me very hungry and thirsty, in addition to elevating my heartrate.
I went out for my first drive (by myself) in the car after surgery
(a short, local drive). I had no problems. There was a sight feeling
of disorientation when making a sharp turn.
I had my wife
drop me off at work for a few hours. Even though it was a Saturday,
and I had no real work I could do, I wanted to get to my office
for a while and see what it was like. I spent the time downloading
some new software and "surfing the Internet". Other than
a raised heartbeat for an hour or so, it could have been like a
day at the office.
Woke up with a
bad headache. After breakfast and a shower, still had a splitting
headache. It seemed to be more on the left side of my head (my acoustic
neuroma was on the right). I took 2 Extra Strength Excedrin tables
and it went away completely. I had never had these before and was
wondering whether this was going to be an extended event. I knew
that headaches were a common side effect of this surgery.
Woke up with no
headache. Developed a headache later on in the morning even though
I was not exerting myself. Took one Extra Strength Excedrin tablet
and it went away in a few minutes. My rash finally went away. I
have observed no side effects from having stopped the steroid tablets.
a bad headache twice a day. Fortunately, a half-strength dosage
of Excedrin clears it up in about 10 minutes. Other than the headaches,
I'm feeling pretty good. I've gone for walks twice a day to build
up my endurance. I'm planning on going back to work November 2nd.
No problem working
for a full day. I might add, however, that I basically sit in front
of a computer all day and, currently, work is not too stressful.
I'm still getting the headaches twice a day. During the morning
I decided to try an experiment. Instead of taking an Excedrin, I
drank a cup of coffee instead (my first since the surgery). It cleared
up my headache. I realized now that, since caffeine constricts blood
vessels, my headaches are probably caused by expanded blood vessels
in the cranial area. My headaches started when I went off of the
steroids (which reduce swelling), so, this is probably tied into
this in the same manner.
I had a glass
of red wine during lunch. Big mistake. It gave me the worst headache
ever after about an hour. My taste sensations on the right side
of my tongue have improved. It is still not 100%, but I still enjoy
food (in fact, I have put on a consistent 10 pounds).
Today was my first
follow-up appointment with my two surgeons. I indicated that everything
was fine except for the headaches. I still experience a headache
about once or twice a day. I typically have some advance warning
and I take an Excedrinderin or a cup of coffee and it clears up
in 10 minutes or so. They mentioned that headaches are quit common
and may take a while to clear up (possibly several months or more).
Having been aware
of the possibility of CSF (Cerebral Spinal Fluid) leakage, there
were times when I thought I might have tasted something salty in
my mouth (a sign of CSF leakage), but thought it was my imagination.
I was informed that if I did have it, it would be more noticeable,
such as clear fluids running down your nose when bending over. Not
having had anything like that, and, from an inspection of my right
ear, it was evident that I did not have this problem.
It was mentioned
that my tumor came out pretty easy. Some tumors can more intertwined.
Mine was like a collection of "loose chicken-fat".
It seems that
they still want me to take it easy (no straining, such as in trying
to lift anything over 15 pounds) for a couple more months. Apparently,
a heavy strain could cause CSF leakage, since it takes a while for
everything to heal from the surgery.
My next appointment
and a follow-up MRI is scheduled for February, 1996.
Post Note on
During the course
of doing my own research into the treatment options for acoustic
neuroma surgery, I did look into stereotatic radiosurgery. I most
say that upon initially looking at the results it seemed quite favorable.
The radiosurgery involves directed beams of radiation applied to
the tumor to stop its growth. It does not require any surgery or
hospital stay. They seemed to have very good results in terms of
preserving the hearing and not doing any damage to adjacent nerves,
such as the facial nerve. There are several centers in the US (Staten
Island, New York and Pennsylvania) that perform this.
I called (actually,
my wife called) the one in New York. They felt that (not surprisingly!)
radiosurgery is the way to go and surgery would leave with all kinds
of bad side effects.
It is good to
be skeptical, however. I had to think that if this process was so
great, why isn't everyone in the medical community using this method
(there are only a very small handful of centers that do this)? Granted
that surgeons may be biased towards surgery, but I would have to
feel that if a non-surgical method offered clearly superior results
than they would not do this surgery just for the sake of doing surgery!
The short-term results looked good, but what about the long term
results? Radiation tends to induce more delayed side-effects. What
would the side-effects of the radiation, 5, 10, 20 years be from
now? I don't think really long-term effects have been that well
established. Bear in mind that the radiation does not remove the
tumor (it may shrink it, however) and it will leave some scar tissue,
making any future sugary more difficult. I wondered too much about
the long term side-effects and it seemed that the recurrence rate
with stereotatic radiosurgery was much greater than with surgical
means (2% verses about 30% from what I recall in one study).
All of this just
goes to show that with any complicated medical procedure, it is
possible to be mislead into a procedure which might not be the best
possible procedure for you. It is important to get several opinions
and have information from several sources. In my case, I was temporarily
seduced by the seemingly good results with radiosurgery and the
easy application of the treatment, but this was not the best treatment
if you consider what the longer term effects might be.
I hope this
account offers some insight. Even though this is major surgery,
the results can be quite good-don't get too discouraged reading
clinical neurosurgical journals! I consider my results excellent
and would have to credit that to the exemplary surgical skills of
my neurosurgeon and neuro-otologist at Georgetown University Medical
Center. I would also like to commend the nursing staff as well,
they did a great job!
Neuroma Surgery: A Patient's Perspective